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CML Advocates Network, February 2020

View this email in your browser For Chronic Myeloid Leukemia Patient Group Advocates CML Advocates Network, February 2020   Rare Disease Day 2020 Rare Disease Day takes place on the last day of February each year. The main objective is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. Rare Disease Day is a global awareness-raising campaign promoting...

CML Atlas survey

       CML Atlas           CML Advocates Network, region East Europe, is conducting a survey and your input would be appreciated. The aim of the survey is to collect data about the region regarding availability of drugs, TFR, etc. Click the button below to start the survey. Thank you for your participation!    ...

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LIVING WITH CML – Patient stories to help better understand daily life with Chronic Myeloid Leukemia (CML)

Lisa Machado lives in Toronto, Canada. She was diagnosed with chronic myeloid leukemia in 2008, when her son Anthony was just one year old, and her daughter Grace was three. Lisa is the founder of the Canadian CML Network. She is also a journalist, writing about the challenges facing people living with cancer, but also exploring what it means to be...

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Lymphoma Coalition 2020 Global Patient Survey – Week 3 Update

Dear Members, To date, we have received 3305 responses (patient and caregiver surveys combined) to the 2020 Global Patient Survey on Lymphomas & CLL. This week we have seen an increase in the number of groups who will receive a country report, and there are a number of others who are close. Promoting the survey works and we encourage each group...

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Lymphoma Coalition Newsletter – January 2020

U prilogu možete pogledati novi Lymphoma Coalition bilten za Siječanj 2020. Lymphoma Coalition Newsletter – January 2020

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ASH 2019 Congress: CML reports

For Chronic Myeloid Leukemia Patient Group Advocates CML Advocates Network, ASH 2019             61st American Society of Hematology Congress Chronic Myeloid Leukemia reports  In December 2019, the American Society of Hematology held its 61st Congress in Orlando, USA. The CML Advocates Network, with the help of our team of patient advocates, has summarized the chronic myeloid leukemia highlights presented in...

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Study on the ‘Corporate Reputation of Pharma Companies’ 2019—as assessed by patient groups from around the world

Poštovani, proslijeđujem Vam mail naše kolegice iz globalnog tima iz Baselu, sa molbom da Vi i Vaši članovi, kojima proslijedite ovaj link, sudjelujete u anketi: Study on the 'Corporate Reputation of Pharma Companies' 2019—as assessed by patient groups from around the world: https://www.surveymonkey.com/r/Corp-Rep-Pharma-2019 Zahvaljujemo Vam na sudjelovanju kao i na dijeljenju ankete među vašim članovima! www.roche.com

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LC – the survey count by member countries for patient respondents

Dear Members, To date, we have received 2277 responses (patient and caregiver surveys combined) to the 2020 Global Patient Survey on Lymphomas & CLL. A number of groups are actively promoting the survey, which is working well.  Keep reading to the end of this email for more information on marketing the survey, including information on what has been translated for your...

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CML Advocates Network, January 2020

For Chronic Myeloid Leukemia Patient Group Advocates CML Advocates Network, January 2020       Our CML clinical trials data-base now lists 54 studies worldwide Our clinical trials registry currently lists 54 studies: 32 CML studies actively recruiting patients, including 2 paediatric trials 7 treatment-free remission trials 20 studies that are no longer recruiting We are pleased to share new trials from...

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Lymphoma Coalition – Survey count by member countries for patient respondents

Dear Members, To date, we have received 1191 responses (patient and caregiver surveys combined) to the 2020 Global Patient Survey on Lymphomas & CLL! Great job everyone! Keep reading to the end of this email for more information on marketing the survey, including information on what has been translated for your use. See below for the survey count by member countries for...

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The 2020 LC Global Patient Survey on Lymphomas and CLL is now LIVE

You can find the survey link on our website, here: www.lymphomacoalition.org/GPS2020.  We appreciate your patience as we worked through some final translation edits.  As a reminder, the survey is available in 19 languages: Arabic Finnish Japanese Serbian Bulgarian French Korean Slovakian Chinese German Lithuanian Spanish Dutch Hindi Portuguese Swedish English Italian Punjabi     Please ask your membership, patients and caregivers/family/friends...

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LIVING WITH CML – Patient stories to help better understand daily life with Chronic Myeloid Leukemia (CML)

  LIVING WITH CML   Patient stories to help better understand  daily life with  Chronic Myeloid Leukemia (CML)     Share Tweet Forward This is the story of Parameswaran PS, a blood cancer (Chronic Myeloid Leukemia – CML) survivor. He was diagnosed in February 2004 and was on standard medication first-generation TKI Imatinib for CML but developed resistance and underwent a bone...

IAPO

IAPO 2019 newsletter

Dear Dražen, Welcome to the final issue of the IAPO 2019 newsletter. Thank you to everyone who took part in making 2019 an excellent year for all of us at IAPO. Some of our highlights include; the establishment of the first ever World Patient Safety Day in May and its marking in September, the IAPO governance framework reviewin June, our first ever Regional Asia Pacific Patients Congress in November...